One year PCR results!

So it has taken me forever to write about this!  We did finally get Josh's one year test results back.   The results were good.

• April 2011  91.43 %
• July 2011     5.19 %
• October 2011  .09 %
• January 2012   .08% 
• April 2012   .02%

If I don't seem ecstatic it is because I am not.  I am just a serious Negative Nelly when it comes to this stuff.  I really wanted to see 0.  It's like I had that built up into my head and anything less (I guess I should really say more) is just not acceptable to me!  ;)   And really, folks, this PCR test is just one number.  And totally not indicative of what his future with the disease will be.  These tests can show when things are going wrong, but really aren't great at predicting whose disease will progress or mutate.  BUT, they are numbers.  And numbers are something that our puny little brains can understand.  I can read/hear a hundred times that this number is not the most important thing, and yet I still cling to it.  And the more I read I realize that many people NEVER hit 0.  And that the testing isn't exactly perfectly reliable, so even a 0 result doesn't really mean a 0 result.  But he is continuing to improve, so that is exciting!

So one year out things are going well.  Josh's main side effects are fatigue, nausea, rash, and hair loss. The hair loss is pretty funny!  He has lost tons on his head, but his legs are pretty hysterical.  He has huge areas with not a single hair and then other spots on the same leg that look normal.  I don't know if I will ever get used to seeing his shiny "looks like they've just been shaved" calves walking around.  :)

Dr. Quintas and I agreed that the rash seems to be worsening, but since it is not itching too much they aren't going to do anything about it.  It is slowly moving down to cover his whole body.  Six months ago it was just his head and torso, then his arms too, and now finally his legs are covered in red dots.

We really think that eating paleo/primal has helped him in the fatigue department.  At least as related to his shift work... he thinks it might be a bit easier to stay awake in the morning hours.  He's been eating paleo for six months now and lost a good chunk of weight.  He loves it and wants to eat that way forever.  I'm the one holding us back in that department!  :)

We have officially made the transition to bloodwork every three months, and bone marrow testing every 6 months.  This makes me crazy nervous!  But it has been 2 months since we have been to MD Anderson and things are OK.  That being said, I am anxious for July to come so we can get him checked out. 

The MD Anderson bills are still slowly rolling in.  Every single month we owe more than the month before.  It is kind of depressing to see the bill going up and up.  We are hoping to make some big changes in the next year to help us out in that department, possibly downsizing to free up some funds.  We appreciate those of you who continue to use our Amazon link to purchase your Amazon stuff.

And speaking of bills I really want to talk about a friend of ours that is going through a difficult time.  God brought Gretchen into my life through our homeschool co-op.  She is an amazing lady and her husband was diagnosed with stage 3 colon cancer not long ago.  He had been laid off before his diagnosis and now they are in a difficult financial situation.   He can no longer receive unemployment benefits and they need help with their household bills.  We set up a Give Forward account for them, just like our friends did for us a year ago.  I know how overwhelmingly suffocating the fear of bills can be.  Your world is crumbling around you and yet you are worried about paying your electricity bill.  It is just not how it is supposed to be.  She needs to focus on Robert getting better.  They need to focus on the emotional health of their kids.  They don't need to be focusing on paying their mortgage.  Please prayerfully consider giving to this family.  Even small gifts add up.  Take a leap of faith to help this family you don't know.  You will bless them in ways you can't imagine.  The tangible results of giving to them are obvious.  We can't see the emotional and mental results of helping them in this way, but they are there, and they are oh so powerful.  Thank you, friends!